23andMe and Genetic Data Privacy Concerns

Overview

• Topic: Privacy and regulation issues surrounding the sale of genetic data by companies like 23andMe.
• Author: Robert Klitzman, opinion contributor.
• Published Date: April 10, 2025.

Key Issues

Genetic Discrimination

• Example of workplace discrimination based on genetic information (breast cancer gene).
• Importance of privacy to prevent discrimination.

23andMe Bankruptcy

• 23andMe faced bankruptcy with millions of people's DNA data up for sale.
• Highlighted critical issues in genetic data privacy and regulation.

Business Model Concerns

• 23andMe's dual business model:
  • Selling DNA data to biotech companies (e.g., Genentech, GlaxoSmithKline).
  • Convincing people to submit DNA by promising health benefits.

Regulatory Challenges

• FDA required 23andMe to prove medical benefits of genetic tests.
• Shifted focus from disease risk to identifying recessive genes.

Privacy Risks

• Genetic data likened to "the new oil" with high value but significant risk if misused.
• Breaches and leaks (e.g., Ashkenazi Jews, Chinese DNA) could lead to discrimination.

Existing Regulations

• Genetic Information Nondiscrimination Act (2008): Limited scope, not covering life/disability/long-term care insurance.
• HIPAA (1996): Protects medical information but not applicable to 23andMe.
• Companies able to pay fines rather than cover high treatment costs.

Consumer Rights and Data Security

• Request to prevent sale of data doesn’t fully protect as data may already be shared.
• Importance of permanent DNA identification – unlike credit card numbers, DNA cannot be changed.

Call for Action

• Calls for stronger laws and regulations to protect genetic data.
• Need for informed consent about data sharing.
• Emphasizes the need for updated laws reflecting technological advancements in data collection and AI.

Conclusion

• 23andMe's issues serve as a wake-up call for policymakers and consumers.
• Urgency in updating laws to ensure confidentiality and transparency in genetic data handling.

Author Background

• Robert Klitzman, MD: Professor of Psychiatry at Columbia University, director of Bioethics programs, author on genetic testing ethics.

Tags

• 23andMe
• Genetic Information Nondiscrimination Act
• Genetics
• FDA
• Privacy